Wednesday, July 3, 2013

A Year Later...

It is hard to believe it has been a year since we officially learned about VRK1 - who would have thought 3 letters and 1 number would have changed our lives in so many ways. That the sequence of one letter in the DNA coding being incorrect could cause all of Ian's issues...that those letters and number only put a name to what we were really dealing with, it did not change all of the symptoms we dealt with, yet our lives still changed that day....July 2, 2012 the search stopped. For me, the unknown was gone, we knew what Ian had, we would not have to wonder any more what was taking away his ability to do the things that we all take for granted. July 4, 2009, Ian started to show major signs of regression, little did we know what laid in front of us. We have been through things most will never go thru, it has brought us closer; I wish we could have gotten closer because of other reasons. It has caused fights over things we never would have fought over before hand, it has brought us closer; I wish we could have gotten closer because of other reasons. It has caused anger, frustration, hatred, emptiness, guilt, loneliness, oh wait there have been feelings of joy, happiness, pride, there has been laughter, smiles, kisses, sticking out the tongue (if you hang out with Ian at all you get this), oh so much more. We tried hard not to let self-pity be one of those emotions. That would bring jealousy of others, who would that help, as I said we tried for that to not be one...but it did come in like all the other emotions. Feelings we may not of even been aware of or been able to explain as well as things we had to decide if we were going to explain to Ian and Becca. 

Many things have become routine for us, Ian does not have much more of his physical ability to loose, VRK1 has taken it. We watch others do things with their sons or brothers that we will never be able to do with ours as VRK1 has taken that from us. But we do have many good things... love, laughter, outings for dinner, outings to the mall, watching movies as a family, seeing the smiles on each others faces. 

The past year has been one of many ups and downs, many challenging decisions to be made. Who knows what lays ahead in the next year...

1 comment:

Anonymous said...

Ruth Cohen Ross Happy 4th! You're doing a great job with your heart and soul in the right place! All the best! XOX

Anne Polakoff King Marci, you continue to be an inspiration for all of us. We have learned so much from you. Thank you for opening your heart to all.

Jay Weiner What Anne said. That, and hugs.

Tamara Jayne Flax You truly are an inspiring woman and mother.

Samantha Gitli Schaefer Ian was blessed with you and Brian as his parents. You're both incredible! xo